Thursday, July 29, 2010

My husband Rick finished his training at Empire College and his graduation ceremony was on Monday. When he was laid-off, the Employment Department sent him back to school to get his certifications up to date (he's a computer tech). My husband despises school, so the year of classes and exams was torturous. He likes learning, but he has no patience for the hoops one is forced to hop through to fulfill the requirements of school. At last he finished, and to celebrate he decided to walk with his graduating class.

The graduation ceremony was almost as grueling as his classes.

Queen Teen and I arrived just as the graduating class was walking in to the auditorium to "Pomp and Circumstance." We found a seat in the back near the wheelchair spot and settled in for what I knew was going to be a long production. Queen Teen gave it her best, really wanting to be there for Rick, but by the third speaker she was shaking and begging to leave. We went out to the lobby and walked around for a while, but after 30 minutes she still didn't want to go back into the auditorium. So we kept walking, back and forth, from the front door to the back, stepping outside for fresh air, then back inside to peek through the doors for a glimpse of what was going on in the ceremony. Holy crap, they were still "speaking." How many frickin speakers did they have? Another 30 minutes passed and the key note speaker, a guy from a local credit union, started his incredibly boring, pointless, all about him, speech. I wasn't the only person getting fed up. The lobby was slowly filling with other parents with their restless, crying, and grumpy children in tow. The only thing that seemed to keep Queen Teen calm was if we kept walking, so I pushed her wheelchair more, back and forth, for an hour and a half. I didn't dare stop because then she'd tremble violently and beg to leave.

I have to applaud her effort, though. She really wanted to be there for Rick, and when at last they handed out the certificates, she agreed to go back into the auditorium so we could cheer for him when he walked across the stage (I cheered. She buried her head against my thigh). As soon as we he got his certificate, Queen Teen and I went back to the lobby and began walking again. 20 more minutes passed before everyone got their certificates and left the stage. After several minutes of searching, Rick found us huddled together amidst a mass of people. He was hot and irritated from sitting for over two hours under hot stage lights in a cap and gown over his jeans and dress shirt. "Let's go," he said with a scowl.

He felt terrible for putting Queen Teen through what turned into an ordeal for her, but really appreciated that we'd stayed to the end. What made the whole thing worse was the feeling that the graduation ceremony was more of a marketing tool for Empire than a real celebration of the student's accomplishments. The speakers talked about the school, not the students, and I felt like they were trying to convince family members to sign up for classes at Empire too. The dean of the school, who was the first speaker, even got the town wrong! Come on, it was Santa Rosa, not San Jose.

I feel bad for Rick who had wanted something better to celebrate the fact that he'd stuck with his classes and got straight A's. I'm really proud of him, and of Queen Teen, who struggled with her anxiety and did her best to be there for Rick. She's really growing up.

But I think when it's my turn to graduate, she'll skip the ceremony. The after-party's more fun anyway.

Monday, July 26, 2010

Queen Teen's wheelchair broke last night, so this morning I stood in the kitchen with the chair, holding the seat back in both hands, wondering what the heck I was going to do. It was a gorgeous July morning, one of those rare summer days that starts out cool and gray and then the sun starts to shine cheerfully, but the breeze keeps the heat at bay. Perfect walking weather. And here we were with a broken chair.

Bollocks.

Queen Teen looked at her chair and then at me and said sadly, "I don't think you can ever fix it."

"I'll try." If I could find an allen-wrench I could replace the bolt that had fallen out, but of course all the allen-wrenches in this house had vanished. We own three sets, but can you find one when you need one? Nope. On to plan B.

I found some zip ties and threaded them through the holes, which seemed to hold, but when we started our walk we hit a bump in the sidewalk and they snapped. Damn. Back home, Queen Teen and I stared at the wheelchair again and she sighed deeply. "It can't be fixed."

"Yes it can," I declared. I went into the house and found the duct tape.

First I threaded two pipe cleaners through the holes and twisted them tightly. Then I wrapped duct-tape around the entire broken section, taping the back of the seat into place. If duct-tape can't hold it, nothing will.

We set out again with the dog happily trotting beside us and when we hit the bump the tape and pipe-cleaners held. Queen Teen cheered. "You fixed it, Mommy. You fixed it. And you didn't have to wait for Rick."

Friday, July 23, 2010

Day two of an IBS flareup and I'd like to say.... owwwwwwwwwww! It feels like I have several spinning, rusty razor blades trapped in my intestines, which are being constricted by some of that yellow, rough rope you get in hardware stores that keeps tightening more and more. Then the pain will suddenly stop and the relief will be immediate. I'll think, thank God it's over, but then a few minutes later the tightening will start and the razor blades will start spinning and I'll just want to curl up in a ball and cry. Throw in nausea and fatigue and once again I would like to say, ow!

Since I'm Gluten Intolerant, I tend to blame these bouts on gluten. And maybe it is, but I've gone over my diet for the last several days and unless I accidentally ate a slice of my daughter's bread (not likely) I don't know what I could have eaten. My stomach has been "off" for a few days, with too much acid (something else I tend to have trouble with). I hold all my stress in my stomach, so bouts of nausea aren't unusual for me, especially around my cycle. For years I've seen doctors to try and figure out what's going on with my digestion, and what they say is I "probably" have Irritable Bowell Syndrome, and "probably" have esophageal spasms, and am "probably" gluten intolerant and "probably" create too much stomach acid which is aggravated by stress, which means, they don't know what's causing my symptoms.

Very, very, very frustrating.

So here I am, day two of an IBS flareup, forcing myself to drink tea and trying to get myself together so I can help my daughter and get through my day. We're supposed to be in Santa Rosa by 11:00 to get her wheelchair fixed and then to San Francisco so she can visit her dad and I can go to class in the morning (internship meeting on Saturday). I have plans to have fun with my good friend Barbara tonight and go explore Hayes Valley after class tomorrow. Spending the evening in her bathroom is not my idea of a good time.

Wish me luck, people. And if anyone else out there deals with something similar, tell me what has helped you.

Thursday, July 22, 2010

Tuesday, July 20, 2010

Yesterday was our bi-yearly CCS appointment, where the doctors and specialists go over Queen Teen's case and decide what she needs, and doesn't need (in other words, what CCS will agree to pay for, and not). CCS is a phenomenal program and without it, Queen Teen wouldn't have such great medical care, but the clinics are a bit... long, or as Queen Teen likes to say, "Booooorrrrrrriiiiinnnnnnng." The last few appointments have been focused on QT's knees and how much she needs braces on her legs to support them, or she "won't be walking in a few years." The doctor and specialists push leg braces, and Rick and I try to explain that sticking her back in full, hip to ankle braces will destroy her mental health.

It's a delicate balance: how do we protect her emotional well-being while still supporting her physical needs?

After the last clinic, we decided to try leg braces if they would indeed protect her knees and keep her walking longer. But we only made it as far as the leg casting. Queen Teen almost kicked the guy making the mold in the head before she started crying and screaming. If she couldn't tolerate getting a cast made of her leg, there was no way she would put up with wearing leg braces. So then we got a second opinion from Dr. Rinsky at Stanford who told us putting leg braces on an ataxic child with a progressive disease is counter productive. Even with braces she probably won't be walking on her own in a few years. That ended the leg brace debate for us.

Rick and I prepared ourselves for our bi-annual lecture as we walked into the CCS clinic with Queen Teen, and right away the doctor asked if she was wearing leg braces.

"No. And here's why..." I explained what had happened during the fitting and the man who had been making the mold, who was at the CCS clinic with us, told the doctor how QT had reacted. Then Rick and I told the doctor about QT's worsening ataxia and our conversation with Dr. Rinsky.

I said, "You can buy the braces if you want, but she won't wear them. We'll have to tie her down every single day to forcibly strap them on. I can't do that to her."

The doctor actually agreed. Everyone in the room, the doctor and the specialists and the CCS case manager nodded and smiled sympathetically, agreeing forcing Queen Teen to wear braces would be bad for her. What a relief. They were finally listening!

And then the doctor began talking about the future, how if her ataxia is worsening there are things we need to be prepared for, like conservatorship and group homes and power chairs and the fact she'll probably need us to care for her for the rest of her life. "I know this isn't something parents want to hear, but you need to think about it."

"We have been," I said. "We're already starting to plan."

Rick brought up toileting and maybe getting a bidet and the doctor agreed it could be helpful. Then the wheelchair guy checked out QT's chair and walker and ordered the repairs they both needed. QT smiled and laughed at the doctor, played with Rick and me, and only declared "I'm booooorrrrreeedddd" five times. Afterward, we went out to dinner to celebrate a successful clinic. No fighting this time, no stress, no feeling like every single person in the room was thinking I was a lousy parent.

They'd given up.

It suddenly hit me that the reason they weren't fighting anymore was because they had all reached the understanding that there wasn't anything more they could do to help Queen Teen. Instead, they would provide what was needed to make life a little easier for her. No more braces or therapies or other types of treatments. There weren't any. Instead they were resigned to watching her lose ground more and more at every future CCS clinic, while making sure she had a comfy wheelchair and a bidet.

And I realized, I've given up too. I am resigned to this fate, and I hate it.

Saturday, July 17, 2010

I must have been crazy to think I would actually get some time to lounge on the deck in my underwear and read books this summer. Since school ended two weeks ago, I've been racing the clock every day, playing catch-up with the pile of work that's gathered since the first day of Spring semester (back in January). There are forms from various agencies needing to be filled out, doctor's appointments to drag Queen Teen to, book marketing and book orders, submissions to the press needing to be read, mending, housework, inventory, and the end of the business tax season (hello sales tax!), all joining forces in one colossal mountain of work, demanding attention now. There will be no lounging in our underwear reading books; there will be tasks to complete! Many, many, many, many, many, many, many tasks to complete, and all before the end of the month.

Starting with : your car!

If I can't keep up with the housework inside the house, do you really think I'd manage to keep my car clean? Not likely. But when my husband pulled half a burger from under my car seat and asked, "How long has this been here?", I knew the car had surpassed filth. That first Monday after school ended, I cleaned my car from top to bottom, vacuuming upholstery, scrubbing spilled soda out of the cup holder, wiping six months of dust off the console, picking something sticky off the steering wheel (chocolate?)... I won't tell you what other things I found buried under the back seat (things I can't blame on the child, unfortunately). And while doing all this scrubbing, I discovered a universal truth: dog hair is forever. No amount of scrubbing or vacuuming with an industrial Shop-Vac can remove dog hair from the interior of a mini-van. Can-not-be-done. But at least all signs of graduate school filth have been removed from my car.

The next day, we all went to Stanford for Queen Teen's MRI. We made tuesday the fun day, wandering around the Stanford mall and then exploring downtown Palo Alto, which is lovely. Spending the night in a motel, we got up extra early to haul Queen Teen kicking and screaming to the 8:00 am appointment at Lucille Packard. She had to have general anesthesia for the procedure, but you'd think we were asking her to eat that month old burger I found in my car. Rick had to drag her out of the car and into the hospital, and then when the nurse tried to get her to drink the medicine that would help her relax, she started screaming and kicking. One Nurse got so upset she left the room. I can only imagine what she must be saying in the break room. At one point in the battle, Queen Teen managed to break free from Rick's powerful arms, only to be capture by me and then forced to drink that yucky medicine with her head held back and the nurse squirting it down her throat with a syringe. I don't know if the medicine started to work, or she just crashed from the adrenaline, but she looked at me with angry eyes and said, "Let's just get this over with." Then she fell asleep.

Times like those make me wonder if all these tests are really worth the trauma they generate.

Now we're back home. Queen Teen seems to have recovered from the torture of the hospital MRI. She and I are hiding from the 100 degree temperature outside, and fighting epic boredom. The AC in my van died, so we're trapped when it gets over 90. Queen Teen can't tolerate the heat, so we watch movies, color, play games, and try not to drive each other too crazy. I dash around from task to task, constantly interrupted by "Mom...." There's another reason I was crazy to think I'd be able to do any lounging this summer: Queen Teen is out of school, too. There isn't a mom on the planet who gets to relax when the kids are out for summer.

Friday, July 9, 2010

And farewell to the long hallway where I first learned to travel under blindfold. The echoes were deafening.

Farewell stairs

and stairs (we spent HOURS on these, learning to go up and down with our blindfolds and canes)

And farewell to some of my favorite things on campus, like the bird bath in the redwood grove, which is my favorite place to relax on campus. Cheerio, birds.

Farewell to the little log house someone in the art department made and then set under a tree in that grove (makes me think of the little houses I used to build when I was a child for the fairies)

Farewell Japanese fountain. The sound of that rushing water was so beautiful

And farewell to the best Latte on campus (seriously. not the best latte in the City, but definitely the best at SFSU.

Yes, I know, I'm not finished with school yet, but I am finished with my classes, which means my trips to SFSU will be infrequent. No more weekly treks to San Fran for my three hour classes with seven hours of homework, or my all day Saturday class. Now comes my internship, which is a whole new challenge. I think I'm ready.

My daughter was born with visual, hearing, and motor impairments, so learning to walk was a difficult task. She used to fall down all the time! We started calling these falls a "Gravity Check," which made her laugh, get up off the floor, and try again.

Her Royal Highness, Queen Teen

This is Queen Teen, age 15. The little girl jumping on the bed is Queen Teen, age 4

About Me

Playwright, author, gardener, Super Mom, Johnny Depp fan and struggling Buddhist. Seriously, I really don't need to reach enlightenment in this life-time, so could you back off a little on the dharma lessons?